Sept 15th – Sept 21st 2024: “Chair Scans and Body Changes”

9/15

I was just thinking about something. It’s always really hard to have to be fighting internally with my body when I’m out and about. When a muscle group isn’t listening quite right to me, and contracting at the wrong time (or a spasm, and it contracts when I’m not telling it) is pretty hard. People will stop and look at me, to understand what is going on. And then all eyes are on me. To try to get my body under control. It’s not exactly the most ideal of a situation when everyone is starting at you, and they don’t see anything wrong, but I’m having a hard time. A really hard time. I think it’s difficult, to try to convey what’s going on all the time. I understand that most folks are concerned, and trying to help, but it just takes me a bit extra time these days.

So, listening to some songs right now, and I do think so deeply about what it all means, and means to me. They all have different meanings now. All the ideas that are discussed mean so much more to me now. Like the song I mentioned before, Backwards Walk, is such a good example of this. Trying to escape from a bad relationship, but in this case, trying to escape from a bad life situation. It’s always interesting to put this new twist on songs and see what they now mean, with this new understanding.

I’m at the gym, in between sets. And I am finally giving myself some time to think. This has been a week, and I need to get things started on the right foot. My balance is getting much improved, I’m sitting upright and balanced curling 15lbs in each hand! I’ve never done that before, and without the support of the backrest! I’m trying not to lean back, and use my body to support himself! Okay I take that back, I just did a set of 20 pounders! That was incredible! It also really gets my heart pumping too, which is great! 

It’s been crazy how it doesn’t take much more than 2-3 days for my mindset to really start to decrease. It’s been interesting taking note of this, and discussing that as well. It’s hard. And I do need to work on controlling my emotions in all situations that I am in. Especially when my body isn’t responding well to me. I really am working hard on slowing down in those moments, but it’s increasingly difficult, especially when I have to nurse my inflamed knee. That made things difficult too, this weekend. 

I even remember how I felt, going outside for the first time time on my own. The first time going to the gym by myself, attempting to open difficult and heavy doors, and traveling down the sidewalk. It was intense. I had no idea what I was doing. And now, I threw my hoodie on without leaning on the backrest, opening doors like a breeze. It’s hard still, but I need to keep progressing! I decided to try something… I decided to try to go across the sidewalk on my own! And I did! It was definitely not as scary or intimidating as I thought it would be! I did it! I really got to work on sidewalk moves like this. It would help.

9/16

At work today, we did a scan of the wheelchair frame! So we can get a more accurate bend radius measurement for the frame sliders I need for loading and unloading!

I’m taking a minute before I hop into the chair to just acknowledge all the feelings and past events that have happened today. It’s been a day already, and it’s not even 5 o’clock! My right leg is really feeling something, especially after putting the ice on it on the drive home from therapy. I’m excited to have the appointment with the PM&R to get this all looked at. But the sensation of my right leg is getting so much better, I am really noticing this too, especially when I am on the bike, at therapy! I notice how it’s different than the treadmill, it really feels like I’m engaging all my muscles in my entire body when I’m on the bike! Which is amazing! I really feel the sensations of fighting the spasms. Like, my voluntary contractions are fighting the involuntary ones? I can both feel myself trying to do it, and then I feel the spasm come on as well? It’s really odd, but I know that I am able to contract the muscles, if not just a bit! So if I work this, I can see this helping! I needed a second to just offload these thoughts because I’ve been on the move today. 

I made it to the gym, ate dinner, and am finally winding down. It’s been a day. There’s so much to always do, it’s hard to keep up sometimes. I’m laying on my back and legs are in the astronaut pants. I usually don’t get to do this in the evening, and I think this is great that my legs are getting a break. My left hip is going to relax. I can feel it. I really think that all this extra work during the evening doing some relaxation helps. He just needs some help. 

9/17

I had quite the conversation with Callie this morning. It turns out at about 4am I woke up to go to the bathroom, and I couldn’t get back to sleep. There was a thought on my mind, and it was causing my eyes to do something weird. It was odd. It was like my eyes were doing a weird cut scene and would flash through a bunch of different images very quickly, even though my eyelids were closed. I noticed how when I thought about a particular thought, it would do this. It was an idea that I couldn’t fully buy into just yet. It was really odd noticing this? I wonder why this could be?

I’m taking this time  after work again today to jot down some notes. My legs are tight. My knees are tight. I’m exhausted. Almost every time my body gets this tight, it makes me feel incredibly awful. My whole mental state just drops off because of it. I really am working on what to do about this. I mean, I know that crawling around helps me the most, but I’ve taken this week off crawling because I bet that it’s aggravating my knee. Which sucks. I do have knee pads on the way, so I am happy about that!

I’m just sitting in the car, not quite ready to go upstairs, trying to get enough energy to get myself out. I got the wheelchair together, but no seat cover yet. I just have a not super great time doing all this when I feel this way. Every deep breath or movement makes it all act up and the spasms worse. I gotta slow down. Take some breaths. I’m almost there. I can do this. I really want to be able to just go for a walk down the street, and get a beer, I feel like. But I can’t. For now, I guess.

I’m just glad I was able to get my hips stretched out after work today. They were so tight, it was awful. 

9/18

Woke up this morning with some really tight legs. Last night was a doozy. Getting up to go pee was a wild time.

So I just got done with the Botox injections. Hip flexors, adductors, and hamstrings. My hamstrings feel wild right now, i definitely could feel the injection and something changing when it happened. I’m going to have to get back down crawling and knouldering as soon as I get those knee pads in! 

I was pretty apprehensive for quite some time about doing this. I wasn’t sure how I was going to feel, and I also didn’t like the idea of doing this either. What’s interesting is the doctor, wait, that’s interesting….. my left hip flexor is feeling very different right now as well? I’m wondering what this is going to feel like? After having this done. I need to keep working on the crawling, therapy, getting to Jake’s bouldering wall, the gym, you name it. I need to keep myself focused.

I was saying that the doctor really could feel how “active” my hip flexors were, and this then led into the conversation about the latest research on how to potentially help the inhibitory signals from making their way to the muscles. It would appear as though they are doing some work on cryogenic freezing of the nerves, which doesn’t damage the surrounding muscles, and that lasts up to 6 months. Sounds to me like Botox on steroids if you will. Doesn’t really sound like a way to help better understand how to get the inhibitory signals firing again or firing better. Which is the problem. There is an over activation of the excitatory signals being sent, and a lack of inhibitory signals. To me, the problem isn’t the excitatory signals, so much as the lack of inhibitory signals. Sounds to me like there is some room for improvement here. 

Today has been a busy day, to say the least. I’ve been to the doctors, to work, to the coffee shop, haircut, the gym, dinner, work, you name it. Goodness. I’ve had a lot to do.

9/19

My body is on the strictest schedule, it would appear. I really just need to carry out some of my bodily functions on the regular, and that really does seem to help with this.

Dinner with Woody, had a great time catching up with him. Him and I have alot of things to catch up on! He told me the story of his Aunt, and we had a great conversation! It was really considerate of him to say that when we were talking and hanging out, he felt like he even forgot I was even in this chair. That was awfully nice, I really need to hear that sometimes. I’m just Joe still.

9/20

9:48pm. I’m just in tears right now. I guess trying to get off the couch will do that to you. When you’re trying to put yourself out there and into other situations and go to new spots. It’s really unfortunate that it had to be from the couch. This was a great day and evening, but I didn’t have to have this right now too. All this nonsense from just trying to get off the couch? Yeah, I don’t think so. I can’t let that happen again.

9/21

I’m really glad to have woken up with a fresh start and attitude for the day! I really have been having a hard time lately, and working on my recovery, and seeing how else I can help, were things I was addressing this morning. By making a list, working on understanding what items I can improve, has really been helping my mindset today. Now I need to get on the floor and try these new knee pads out! I’ve really been trying to not use my hands more and more when I’m leaning over in the bathroom. Trying to only use my core/ abdomen has been hard work! But just little things like this everyday are going to make a big difference overall!

OH MY GOODNESS IM BACK ON THE FLOOR!!!! I feel so good moving around! My knees are feeling so much! My abs are activating so much lower into my pelvic region than they ever have before!! My balance, my control, the movement in my body is leaps and bounds better than just over a week ago when I was on the floor! My body is truly trying to heal!!

We made it. We made it all night/day for Bayview Bash! I can’t believe we were able to do it! That was an 8hr day after like, 3 o’clock?! Holy smokes that was a long day! Especially for not eating dinner! We just ate pancakes, hehe! Sometimes we can’t always be good, and for those days, that’s what pancakes are for! We really had a good time and we were out and about for such a long time! I can’t believe I managed to get myself around except for the uphills! I got a little extra help on that! It was a nice evening with friends, I’m really fortunate that I’m able to get out like that still, it means a lot to know I’m able to still do that. Until next week, let’s see when the baby arrives!!!